Almost Invisible/’Fessing Up

My kid is on the spectrum. There. I said it. Those words don’t roll out of my mouth, because in the 18 months since he was diagnosed, I’ve barely said them out loud.

“I’m going to go ahead and give him a diagnosis: Atypical PDD-NOS,” said the neuropsychologist. In plain English: my four-year-old was at the high-functioning end of the autism spectrum, and he’s a more social guy than is typical for kids with this diagnosis.

“I don’t know if the diagnosis will stick,” the doctor explained. “For now it fits, and when he comes back for another evaluation in 2 years, we’ll see where things are.” It was honest, but probably the wrong thing to say to mom who was raised by a family that competed in the Denial Olympics. I latched on. I told myself he was borderline, that the diagnosis definitely wouldn’t stick and so it didn’t matter. He was the same wonderful kid he’d always been, right? It was just a new description

Most of the time I can get away with it. He doesn’t have an IEP. He has Sensory Processing Disorder, but occupational therapy has helped. He struggles with focus, but his genetic history has prepared us for the possibility of an ADD/ADHD diagnosis down the road. He’s a charming, loving, social guy who makes friends easily, even if he does sometimes struggle with reading social cues.

But sometimes the diagnosis catches up to me.

A few weeks ago our family headed north for our synagogue’s annual winter weekend. We ski, tube, play games, and (because we’re Jews) eat an unbelievable amount of food. The kids run in a herd and there’s a lot of communal parenting that goes on during these weekends.

My kids ran around like gleeful maniacs from sunup until well past sundown. Months of occupational therapy have taught us that E. needs breaks even when he doesn’t think he does. The breaks calm his system down so he doesn’t get so overloaded he can’t control himself. There were no breaks that day, but we justified it by talking about how much time he’d had outdoors, which always calms him.

Around 9 I finally blew the whistle and took the children upstairs for bed. I got my daughter into her pajamas, but when I turned to do the same for E., he went off like a bottle rocket. Screaming. Kicking. Threatening. Hitting me. Hitting himself and his sister. Slamming the door. Flailing. Inconsolable. Repeating, over and over: “I don’t want my pajamas!,” even after I told him I didn’t care what he wore to bed.

I could have been singing the score from Tommy and he wouldn’t have noticed. His brain was stuck in a loop. After 90 minutes, my wife came upstairs and worked her magic. I was beside myself. These tantrums send me into the depths of parental self-doubt. Seeing my depression, she dispatched a friend, the parent of a 17-year-old with Asperger’s Syndrome.

My friend got it – really got it – because she’d been there over and over for 17 years. And she was probably the only person who could have talked me off that particular ledge that night. Because her kid is on the spectrum. Like mine. Even this Queen of Denial heard my own brain say it that night.

Her kid is on the spectrum, just like mine.

These tantrums don’t happen in front of other people. Ever. And it feels like they’re impossible to describe. And his special needs are invisible most of the time to the untrained eye. So I don’t even try to explain. But in not trying, I’ve isolated myself. And I feel lonely and I complain about how no one gets it, no one understands. See how this works?

So here I am. Trying to accept that the diagnosis is real, owning up to it by telling YOU about it, so we can all get a little help and feel a little less lonely with this.

If you’re reading this, you probably understand, or you love someone who understands. And maybe you feel a little less lonely now too. It’s the best any of us can do.

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About The Author

Julia Roberts

Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.

This story of yours is so much like mine. I lived that denial. I felt and even still do sometimes feel that parental self-doubt. You are not alone. I am not alone. So many of us face these feelings. It’s good know we aren’t alone.

“These tantrums don’t happen in front of other people. Ever. And it feels like they’re impossible to describe. And his special needs are invisible most of the time to the untrained eye.”

I could have written these words. I live what you’re describing. I don’t have a partner to talk me off the ledge. I fail, and fail miserably, most of the time with the tantrums, always trying to do better with the next one. Always trying to remain balanced when I am terrified and alone.

I never knew, until I read the above words, that anyone else had the “invisible” tantrums, the ones that people who know them are shocked to hear about – “How could that be? I’ve never seen anything like that here.” Yeah, I know. It’s reserved for home. Lucky me.

I wanted to say something about those tantrums, something that sounds trite if you don’t know that I know about invisible tantrums too…

I’ve been told before that yes, kids act differently when they’re home than when they’re out in public; at home they FEEL SAFE ENOUGH to have the meltdown. It is a badge of honour, in its way, that your child trusts you enough to keep them safe when they express how overwhelmed they have become.

I’ve learned, too, that when that kind of meltdown comes, the best thing you can do is let it do its thing, and minimize anything that can add to it, because there’s not really any way to reason with someone who is that overdone. Don’t let them get hurt, don’t let them hurt anyone else, remember that it’s not really your child doing the yelling and hitting and howling – it’s the storm.

It sounds like you already know what went wrong, and you’ll be coming up with some sort of way to help it be better next time, even if the next time won’t happen for a while – you’re the ones who know your little one best, and can figure out what his limitations are at the moment. I have faith in you. It will be okay. *hugs*

We live in a mostly silent world for my son’s invisible challenges as well. I feel like talking about it in any way helps. Reaching out in this space is so awesome. I’m so glad we can lean on each other.